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Our Little Ballerina

From Kate:

I never have been the type to dress in pink or in dresses for that matter, but I will say that since Getty has arrived, I have thrown that all out of the window. She looks extremely cute in dress and frilly things. So last night after Grammie and Papa left for the night, we played dress up.It is funny how your perspective changes when you let someone change it for you.


How Getty Eats

From Mark:

I have been getting questions as to how Getty eats now that she has a G-Tube. It’s pretty simple, really. Getty can still take formula orally if we choose to do so. However, oral feeds are risky because her swallow function is not 100% and formula could end up in her lungs that way. So, we got her a G-Tube.

We also got her a Nissen procedure. The Nissen does not close her esophagus. It just makes it a bit tighter to help prevent food from coming out of her stomach, potentially ending up in her lungs.

Here’s how she eats:

1. Make baby formula, as usual.

2. Pour the formula into the feeding bag. The feeding bag has a tube coming out of the bottom, which leads down to the blue box, which is a feeding pump. The pump then pumps the formula further down the tube toward Getty’s little tummy.

3. Here is the purple tapered tip of the feeding tube coming from the feeding pump.

4. Here is Getty’s G-Tube also called a “button.” It’s just a little tube that leads inside her stomach. It has a little rubber cap on it to keep it closed. The little bandages on her tummy will fall off in a couple weeks or so.

5. This is the end of a short tube that plugs directly into to the G-Tube opening.

6. Just open the G-Tube and plug the short tube in.

7. Connect the opposite end of the short tube with the purple tip of the feeding tube coming from the feeding pump.

8. Activate the feeding pump, and Getty is a happy little owl.

There’s a bit more to it, but those are the basics.



From Kate:

To our sweet little owl, on the eve of your 8 month birthday we want to give thanks. Thank you for your beautiful eyes and your quick wit. Thank you for being so brave in the hospital and showing your mommy and daddy what unconditional love truly is. Thank you sweet Getty for being so patient with us while we learn as much about this disease as possible so we can be your warriors and fight for the best care that you deserve. Thank you for your grace and mischievous nature. You are a gift, a gem, and our baby. Happy 1st Thanksgiving. We love you!


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Synagis & RSV

From Mark:

Getty got her second Synagis shot today. That is an antibody designed to protect against the respiratory syncytial virus (RSV). While RSV may present as a common cold in many kids, it can be life threatening to children with compromised respiratory defenses, like Getty.

The RSV season runs from about November to April. So, Getty will need to have very limited public exposure until spring. Nobody can come into our home who is or may be sick or exposed to others who are sick. All hands must be washed and/or sanitized in our home.

If either Kate or I gets a cold, the infected person must sleep separately, wash frequently, wear latex gloves at home, and wear a mask at home.

The Kaiser nurse told us the Synagis shot costs Kaiser $2,000 per dose, and Getty needs it once every four weeks. That works out to $14,000 worth of Synagis shots to get her through RSV season. For that price, couldn’t Kaiser just pay our way to Australia for the winter?

Oh well, Getty will be on lockdown until spring. Good thing it’s football season!  🙂